Monday, November 25, 2013

Week 14: Single Mom

This week, Papa Bear went to a conference, leaving me and Lemon home by ourselves for 5 days and 4 nights.  Going in to Papa Bear's absence, I was calm and confident.  After all, I figured, despite the fact that we aim to be a pretty egalitarian household, I do at least 75% of the child care stuff.  So, I didn't think that being solo would really feel that different.  I mean, tired is tired, right?  WRONG.  That 25% that Papa Bear handles is clearly the buffer that is saving me from total disintegration.  Thankfully, with help from Nona and visits from a few friends, we made it through.

I didn't cook anything more complex than a can of tomato soup, let the house fall into a state of severe disarray, and only barely prevented the cats from dying of either starvation or dehydration (good thing evolution equipped them with the ability to make noise!).  I believe I washed my hair exactly once, and only managed that since Nona was there.  I have absolutely no idea how anyone manages to be a single parent full time.  It is an astonishing act of strength and will that should  command our utmost respect.

Due to the extenuating circumstances, this week's post will be relatively short, and heavy on photos.  For example, Lemon in the bath tub.  Is there anything cuter?  I didn't think so.

Lemon has just completed Phase II of babyhood, as defined by Burton White.  One of the things White identifies as an indicator of the end of Phase II is "hand regard," when babies stare at their hands and slowly come to understand that the hands belong to them.  Lemon has his own take on this: foot regard.  He has no real interest in his hands yet, but those little feet are just the right distance from the eyes to be easy to focus on, and they sure move around a lot.

While it may be too recent a phenomenon to be covered in White's book, the end of Phase II also seems to be accompanied by what I will refer to as "screen awareness."  We are in trouble.

Lemon has also become a lot more vocal in the last few days, adding a variety of high-pitched squeaks and squeals to his vocabulary.  One of the best ways to elicit these, we discovered, is to sing to him.  Here is a little video clip of Lemon with my dear childhood friend Jen, demonstrating his growing enthusiasm for music!

Monday, November 18, 2013

Week 13: What's it worth?

After an incredibly busy week last week with our trip to our future home in Wisconsin, this week has been mercifully a much more normal one.  Thanks to Nona and Opa, Papa Bear and I were even able to get out on a date.  We had an absolutely delicious meal at Upstairs on the Square, which you should visit soon if you are in the Boston area, as they are closing at the end of this year.  We had gone there way back when we were first dating, so it was fun to take a little stroll down memory lane and see how far we've come in the last five years.

Since nothing of significant note happened in Lemon's life this week, I thought I would devote this week's posting to a topic that has been on my mind a bit over the last few weeks: a medication called palivizumab (which goes by the brand name Synegis).

Synegis is a treatment that can reduce the severity of lung disease caused by respiratory syncycital virus (RSV) in "at risk" babies (babies born prematurely, babies with certain heart conditions, and maybe babies with CF).  Most children in the US have an RSV infection by the time they're two.  RSV infections are usually mild but can occasionally be severe enough to require hospitalization, especially in premature babies or babies with some other condition that compromises their lung health.  Unfortunately, there is currently no vaccine that can protect babies against RSV.  Vaccines act by stimulating the body to produce antibodies against the particular pathogen that causes a disease.  Synegis, which is a man-made injectable antibody against RSV, is effectively a short-cut; instead of getting the body to make its own antibodies, the doctor simply injects the baby with ready-made antibodies.  The idea is that these ready-made antibodies help the baby fight off an RSV infection if it happens.

One of the first things I wondered about when our doctors first recommended that Lemon receive Synegis was how much it really helped.  At the time, Synegis had mostly been studied in premature babies, with relatively little data available for CF babies. There just aren't that many CF babies (only about 1000 per year in the US), so it is hard to get enough of them to do a meaningful clinical study.  A recent review that collected all the published data so far on Synegis in CF babies found that might be beneficial--untreated CF babies had about a 1% chance of being hospitalized for RSV, and treated babies had about an 0.1% chance.  So, as a parent, how do you think about that result?  Do you think that your baby was very unlikely to be hospitalized for something in the first place, and with the treatment he is even less likely?  Or, do you think, "Wow, this treatment reduces the chance of my baby being hospitalized by 10-fold!  Sign me up!"

Next, you might think about the costs of the treatment.  There's the inconvenience of an additional visit to the pediatrician once a month for five months to get the shots.  There are the (very minor) risks associated with receiving the shot, which is overall an extremely safe therapy.  In contrast to what my fellow residents of the blogosphere seem to believe, the shots don't contain any rat DNA, and the recombinant DNA technology used to produce the antibody is very safe.  Then, there is the financial cost.  It's hard to find out exactly, of course, but there is no doubt whatsoever that Synegis is an extremely expensive medicine--about $1500 per shot, or around $7500 for the full treatment course.  It's so expensive, in fact, that the drug company that makes it sends you a nice little gift box once they receive the order for the drug from the pediatrician's office.

We're very fortunate that our insurance company covered Synegis without much fuss, so we didn't have to think about the financial cost at all, nor did our doctors.  But, isn't this exactly what we're told is wrong with healthcare in America?  That both the patient and the provider have no idea how much things cost, so lots of money is spent on treatments or procedures of minimal utility?  By deciding that I wanted Lemon to receive Synegis, even though the actual benefit might be quite small, am I becoming part of the problem?  If I had to pay for Synegis out of pocket, would I do it?

Interestingly enough, I might have the opportunity to answer that question.  The CF center in Wisconsin doesn't seem to think that Synegis is worth it, and the doctor we met there said our new insurance would be very unlikely to cover it, especially since Lemon will have received 3 of the 5 shots by the time we get there.  So, do I cover the remaining two shots out of pocket?  If I do, and he doesn't get RSV, would I feel like it was a waste of $3000?  If I don't, and he does get hospitalized with RSV, would I feel like it was my fault because I wasn't willing to shell out the money? 

Last week, a loyal blog reader pointed out this article from the New Yorker that was published about 8 years ago.  It discusses how different CF centers were getting very different outcomes, despite a supposedly unified set of guidelines for patient treatment.  At one of the centers that was getting the best outcomes, there was a doctor who was absolutely fanatical about maintaining lung function in his patients.  In his view, each day a CF patient had a 0.5% chance of catching a dangerous lung infection (that is, a 99.5% chance of staying healthy).  By being absolutely obsessive about treatment, the patients could reduce that risk to 0.05% per day (a 99.95% chance of staying healthy).  That difference doesn't sound like much, but over a year it is the difference between an 83% chance of getting a lung infection and a 16% chance--which is huge.  There is some evidence that viral infections like RSV can make CF patients more susceptible to the bacterial infections that lead to permanent lung damage.  So, does that mean that Synegis treatment is part of staying in that 99.95% category? If it is, then it's totally worth the cost to me.  I just wish I knew!

Monday, November 11, 2013

Week 12: Home is where the heart is

In addition to everything else that's been going on in our lives, before Lemon was born, we decided to relocate from Boston to Madison, WI.  We'd both been offered really good jobs there and felt like it was time to try something new after nearly two decades in Boston.  This week, we went out to Madison to look for a place to live and sort out a few other details of our new lives before the big move in January.

This was our first time flying with Lemon, so we were a little nervous about how everything would go, and how we would manage the giant pile of luggage that an infant seems to require.  Luckily for us, we were "randomly" selected for TSA-pre at Logan, meaning we were allowed to leave our jackets and shoes on, and leave our laptops and liquids inside our carry-on bags.  The flights themselves went very smoothly, much to our surprise and the suprise of our fellow passengers, who looked at us with fear in their eyes as we were boarding, but after the flight complimented us on what a good baby Lemon is.

Our housing search ended up being relatively straightforward.  We looked at a bunch of houses on Thursday, went back for a second look at our favorite on Friday afternoon, put in an offer on Friday evening, and had the offer accepted on Saturday.  Somehow we forgot to take a single picture of our new house, so I'll have to save that for January.

Nona commented that Papa Bear and I seemed extraordinarily calm throughout the whole home-buying process. We had done a lot of research before we left, which certainly helped.  At least for me, though, buying a house was just another material purchase.  Yes, it's a lot of money, but in the context of having a baby with a serious diagnosis, it honestly just doesn't seem like that big a deal.  It's a very nice house in a nice neighborhood, so I'm sure we'll like it, but if we change our minds at any time, we can sell it and move on.  If only we could cure CF that easily.

Another highlight of the trip was meeting Lemon's new CF specialist.  He was recommended to us by Lemon's current team at Children's, and seems like a good fit for our family.  It was interesting that in just our 30 minute meeting with him (just a meeting, not a clinical visit), many differences came out in terms of the standards of care applied at Children's as compared to Madison.  Most strikingly, they seem to be much more relaxed about infection control measures in Madison--unlike Children's, they do have a waiting room, and the CF care team doesn't put on fresh gowns before going into the exam room with a CF patient.  According to our doctor, Children's in Boston started doing that after they had some "bad outcomes."  Which makes me wonder--is it right for Madison just to wait and see if they have any "bad outcomes" before they switch to the more rigorous procedures?  They also use higher enzyme dosages, and tend not to use Synegis (an antibody shot that protects against respiratory syncytial virus) that was pushed pretty hard by our team at Children's. 

It's so hard as a patient to know what the right course is for any of the CF treatments.  I even did a quick literature search on the enzyme dosages, just because I was curious, and it seems like the reason there are differences between centers is that the research just isn't that clear about what's best, so each center tries to find its own way.  Boston seems to like to dose at the low end of the published range, whereas Madison goes about 3 times higher.  Madison does seem to have better outcomes in terms of BMI, so maybe they are on the right track, but it's so hard to tell.  As a patient it would be comforting to believe that the doctors have all the answers, but especially for a rare and complicated disease like CF, that simply isn't true.  Everyone is trying to do their best with relatively limited information, and to adjust the care to each individual patient. 

With the house and the CF doctor taken care of, we had some time left over to get into the true spirit of Madison.  We bonded with Nona and Opa over the Badgers-BYU football game, which had the entire town full of enthusiastic alumni, all wearing red (we found out that UW Madison has 400,000 living alumni!).

Papa Bear also took advantage of the opportunity to make friends with our new mascot.
It's hard to believe that this move is less than 2 months away--19 years in Boston draw to a close.

Monday, November 4, 2013

Week 11: Clapping for clearance

Wednesday of this week found us back at the CF clinic once again.  Each visit has the regular check-up with Lemon's doctor, and then a little something extra.  This week, we met with a physical therapist who taught us how to do the airway clearance therapy (ACT) that will be a daily part of our lives from now on.  The idea of the therapy is to loosen the sticky mucus in the lungs of CF patients so that it can more easily be coughed up and cleared.  At this visit, we learned the "old-fashioned" way of doing this: clapping on Lemon's chest with cupped hands.  We'll do his therapy this way until he's bigger, probably around 6 or 7, when he can start using a special vest to create the necessary vibrations mechanically.

To do the therapy, we have to clap on the sides of Lemon's chest

                                                            the front of the chest

and the back of the chest, each for 3 minutes.

We put what we learned into practice first thing Thursday morning.  Although babies don't have the very thick secretions that clog the lungs of older CF patients, it's important to start the ACT early so that they (and their parents!) get used to it as part of their daily routine.  Lemon certainly seemed surprised when I picked him up and started thumping on his chest, but he quickly settled down.  On Saturday morning, he actually fell asleep during the session.

Even though the therapy itself only takes 15 minutes at the moment (it will become longer and more involved as Lemon gets older), it has solidified in my mind the feeling that I've had since Lemon was born that my mornings are not my own anymore.  For someone who has been training in the morning for the better part of 15 years, this represents a major adjustment.  I'm slowly coming to terms with the fact that I will become one of those insane people who trains on a treadmill at night, at least during the week.  It will be sad to give up my morning runs and rides, but there isn't even a question as to what is more important. 

In addition to all the CF stuff, we had some fun times this week--Lemon's first world series and his first Halloween (thanks to Lemon's friends Andrew, Sarah, Linn and Dave for the great shirts!).

Papa Bear and I even managed to get a little work done on Sunday morning!